EPIC Seminar: Expertise, Lived Experience and Legal Processes

 Sheelagh McGuinness reports from an EPIC seminar in February 2026.

In February 2026 EPIC hosted the first in a series of seminars examining the relationship between legal processes and epistemic injustice. The event brought together researchers from philosophy, law, and social science to consider how legal and regulatory frameworks can exacerbate or ameliorate the epistemic marginalisation of those who engage with them.

Professor Lisa Bortolotti (EPIC/University of Birmingham) opened with a conceptual analysis of expertise and its relationship to epistemic injustice, arguing that expertise should be understood both in terms of the knowledge an individual possesses and as a form of performance in a particular environmental context. An agent may hold relevant expertise yet be unable to exercise it if the conditions necessary for effective performance are not in place. Examples include not being invited to contribute, if space constrains or excludes their perspective, or if their testimony is challenged or reframed without genuine engagement.

Bortolotti paid particular attention to experts by experience, focusing on people with lived experience of mental health services participating in healthcare research. She identified three stages at which such expertise may be obstructed: exclusion from participation entirely; inclusion on terms that do not permit meaningful contribution; and formal inclusion accompanied by insufficient uptake of testimony. Each stage, she argued, can be understood through existing concepts in the epistemic injustice literature, including participatory injustice and testimonial injustice.

You can read more about this research here.

Dr Lucy Series (University of Bristol) introduced the labyrinthine world of mental health and mental capacity law, offering an account of how lived experience has (or has not) shaped these frameworks in England and Wales. Series’ presentation began by outlining the commonly accepted distinction of mental health law as a coercive instrument and mental capacity law as a more benign mechanism for substitute decision‑making in a person’s best interests. She proceeded to detail the ways in which this distinction is inaccurate. In particular, she highlighted how the 2005 Mental Capacity Act can in practice authorise detention and involuntary treatment and often with fewer procedural safeguards than those available under the 1983 Mental Health Act.

Series traced the involvement of disabled people and mental health service users in shaping these legal frameworks over several decades. She concluded by considering the relationship between legal complexity and genuine participation. Where legal frameworks are highly technical and their implications difficult to foresee, consultation processes that do not invest in participant understanding risk generating outcomes that diverge sharply from what advocates intended. She closed by asking what structural conditions are necessary for expertise by experience to be genuinely incorporated into legal and regulatory processes.

The final presentation applied the conceptual frameworks outlined in earlier presentations to empirical research on bereaved families' experiences of two distinct legal processes: coroner's inquests and fitness to practise hearings. Professor Sara Ryan (Manchester Metropolitan University) presented findings from research with family members who had engaged with these processes following healthcare-related harm, including the deaths of relatives with learning disabilities or autism. You can read more about this research here.

Families reported entering these processes as relative novices, surrounded by professionals whose familiarity with procedural norms gave them significant epistemic advantage. Families were expected to provide instruction without understanding what that meant procedurally, leading to a form of disconnection that Ryan characterised as epistemic marginalisation. The fitness to practise hearings produced comparable difficulties including:

• witness statements were altered or reduced in scope without notification
• charges were revised between referral and hearing
• participants who had prepared to give evidence were informed at very short notice that their testimony was no longer required.

Some participants stated that they would not make a referral again and one described the fitness to practise process as more distressing than the bereavement itself.

Ryan concluded by emphasising how modest reforms, for example, clearer communication, named contacts, and acknowledgement of the person who died as an individual have the potential to meaningfully ameliorate epistemics injustices.

The event offered compelling insights into how epistemic injustice operates across healthcare, law, and regulatory practice. A consistent pattern emerged across all three contexts (through the obstruction of expertise by experience in clinical settings, the failure of legal frameworks to meaningfully incorporate the perspectives of those they affect, and the systematic marginalisation of bereaved families in coronial and fitness to practise processes). The people with the biggest stake in these processes are routinely denied the epistemic standing to influence them. Addressing this requires not only conceptual clarity about what epistemic justice demands but also sustained attention to the structural and institutional conditions that make genuine participation possible.

Sheelagh McGuinness

Sheelagh McGuinness is professor of law at the Centre for Health Law and Society, University of Bristol. Her research interests include the regulation of reproduction, and health law more generally. Sheelagh is currently a co-investigator on two projects: Epistemic injustice in healthcare funded by the Wellcome Trust and Reproductive Borders and Bordering Reproduction (RBBR): Access to Care for Women from Ethnic Minority and Migrant Groups funded by the AHRC. Sheelagh is a member of the Board of Trustees of the British Pregnancy Advisory Board (BPAS). 

The Role of Silence and Music in Philosophy

On 16 March 2026, members of the EPIC team were joined by researchers, musicians, and members of the public for an evening of philosophical contemplation, music, and meaningful silence. The event, held at St George’s, Bristol, invited guests to consider what role silence plays in music, philosophy, and everyday life. Opening the event, music therapist and NIHR doctoral student (Hull York Medical School), Kate Binnie, led guests in a moment of collective silence, prompting reflections on how silence can create space for self-knowledge as well as support deeper social connections.

Echoing these ideas, in particular the therapeutic, and sometimes necessary, role of silence both individually and interpersonally, philosopher and EPIC research fellow, Dr Dan Degerman, provided an opportunity to consider the implications of ‘breaking’ silences, particularly in the context of mental health. Degerman emphasised that, while in many cases creating opportunities for discussion around experiences of mental illness can help reduce stigma, these discourses also risk framing silence as inherently harmful or negative. 

To remedy this, Degerman proposed ways of disambiguating different types of silence, introducing two key concepts, namely, literal and metaphorical silence. Literal silence being the absence of sound when nothing is said, and metaphorical silence referring to the absence of speech when something could, or indeed ought, to be said. Degerman explained that both kinds perform an important function in everyday interactions with others, yet only some are taken to be meaningful or welcomed silences, whereas others can create discomfort. That is, whereas some shared silences can facilitate a sense of closeness, mutual understanding, and intimacy, others create ambiguity that can be experienced negatively.

Taking up the invitation to reflect on the communicative and deeply embodied role of silence, Bristol Schola Cantorum performed a piece illustrating in practice how silence and music – like two sides of the same coin – shape the way we experience sound and its absence. Joining in the discussion, University of Bristol music scholars, Professors Emma Hornby and John Pickard offered their perspectives on the role of silence in musical performance and composition, prompting reflection on the breath and the careful placement of silence in orchestral performances.

Drawing these perspectives together, speakers and panellists, including philosopher of language, Dr Anthony Everett, and EPIC Principal Investigator, Professor Havi Carel, engaged in a thought-provoking panel discussion spanning tensions in conceptualisations of silence in the West and East, and its utility – or perceived lack of – in Western analytic philosophy, to its role in palliative care. Each of these perspectives provided avenues for reflecting on the role of silence in different contexts, including healthcare, highlighting tensions between the silence that occurs when no further speech is needed and the silence that emerges as a result of communicative failures between practitioners and patients.

In my experience, the invitation to reflect on silence prompted thoughts about voluntary and non-voluntary silences, particularly in the context of my own research on the COVID-19 pandemic and the measures used to control it. While for some, the silence that followed periods of national lockdowns and widespread closures of busy, otherwise noise-filled environments was experienced as a welcome break, for others, the (relative) absence of noise, and perhaps in particular the absence of other people, was deeply distressing. That is, while silence can bring a sense of peaceful solitude in some cases, in others it can amplify feelings of social isolation and loneliness.

Hence, not only did the event provide a space to reflect on the role of silence in music and philosophy, but it also provided opportunities to reflect on silence more generally. The significance of this is especially pertinent in times of widespread upheaval and crisis, like pandemics, but also other kinds of crisis, such as war and conflict, where silence as an absence of sound could be reconceptualised as a privilege not all have access to. Overall, while silence exists in many forms, its role in society, and its seemingly neutral or passive nature, can mean it is taken for granted, and yet its significance extends beyond its communicative function – it is in many ways a way of being and relating to others and the environment of which we are a part.

Author bio

Kathryn Body is an early-career researcher working at the intersection of the medical humanities, public health policy, and qualitative health research. She has a Master’s degree in Medical Law and Ethics from King’s College London and recently completed her PhD in the Department of Philosophy at the University of Bristol. Kathryn’s PhD research analysed online qualitative survey data on the COVID-19 pandemic in the UK, Japan, and Mexico, with a specific focus on embodiment and other aspects of subjective, lived experiences that came to the fore during that time. Currently, Kathryn is working as a part-time research assistant in the Anthropology Department at University College London, on a project exploring the biosocial impact of multiple caregivers in the lives of children and young adults, with a particular focus on mental health and wellbeing.

Epistemic Injustice in dialogue with phenomenological psychopathology

In this post, Lea Nickel explores the potential and limitations of phenomenological psychopathology for better valuing the experiences of people diagnosed with mental health problems.

Image credit: Wellcome Collection

People who are suspected of having or have been diagnosed with a mental disorder are often stereotyped in ways that undermine their credibility. The concept of epistemic injustice is an important analytical tool for capturing these experiences. Testimonial injustice can manifest itself in the form of prejudiced overgeneralization of statements and behaviour. An example would be when all statements made by a person with delusions are seen as delusional, therefore, interpreted as part of the delusional belief system. 

Another form of testimonial injustice is “diagnostic overshadowing”, which describes the tendency to attribute physical symptoms to a pre-existing diagnosis of a mental disorder. Hermeneutic injustice is fuelled by the dominant status of the third-person biomedical perspective on experiences and the excess credibility of psychiatric knowledge. These forms of injustice not only hinder individual recovery but also contribute to the structural discrimination of people with mental disorders. This highlights the need for a more inclusive incorporation of the experiences of those impacted.

I see phenomenological psychopathology as a suitable starting point for this. Rooted in Husserl's vision of phenomenology as a ‘rigorous science’ that strives for knowledge without preconception, phenomenological psychopathology is focused on the exploration of patients' first-person experiences. By actively bracketing assumptions and deep-rooted prejudices and empowering patients to develop their own interpretative frameworks, the factors contributing to epistemic injustice are reduced. In the following, however, I will examine one possible limitation of phenomenological psychopathology with regard to improving epistemic injustice.

When we deal with epistemic injustice in the psychiatric context, identity biases that affect people because of their mental disorder are central. We call those sanistic prejudices. Sanism, like other “isms”, is based on deeply rooted social constructs and structures that aim to disadvantage or exclude certain groups, and thus contribute to the maintenance of social inequalities. However, forms of discrimination rarely occur in isolation. If a person is impacted by sexism, racism, classism, ageism, ableism, homophobia, or transphobia, then these oppressive mechanisms also operate in the context of mental disorders. 

This can only be captured by an intersectional approach, which leads us to a closer inspection of the “phenomenological reduction” used in phenomenological psychopathology. In general, this means questioning assumptions about the person as well as their symptoms and possible diagnoses, in order to follow Husserl’s call to get “to the things themselves”. This, however, can lead to certain dimensions of experience, such as racialized and gendered experiences, being lost. As a result, differences in experience due to the different situations of those affected cannot be reflected. If the experiences of marginalized people are taken as a basis for knowledge without reflection and without naming the oppressive structures that produced these experiences, these very structures can be re-naturalized. In the context of phenomenological psychopathology, this could be countered through an “intersectional unfolding” as proposed by Spencer (2024). Here, the various social positionings and their effects can be addressed.

An interesting starting point for this is the connection between rationality and femininity. Historically, the feminine – and consequently women – have been pathologized as unstable, hysterical, deceitful, and irrational. What such an intersectional unfolding can look like is shown in Ruth Bankey's paper “La Donna è Mobile: Constructing the irrational woman”. She shows, based on intensive conversations with women impacted by agoraphobia with panic attacks, that their experience can be described as a fear of embodying the hysterical image, characterized by excessive femininity, loss of control, and potential “madness”. While phenomenological reduction carries the risk of perpetuating a kind of ignorance and thus upholding seemingly neutral conditions of experiences an intersectional framework allows clinicians to recognize how overlapping identities shape experiences of distress.

In general, the sexist ideas surrounding mental disorders make it difficult for marginalized people to understand their experiences beyond these discriminatory constructions. Thus, in order to fully analyse epistemic injustice in the psychiatric context, there must be an awareness of the intersections of different axes of discrimination. This addition would facilitate the capturing of different experiences and structures of meaning that arise from different social positions. Not only can phenomenological psychopathology be fruitful for combating epistemic injustice in the psychiatric context, the debate on epistemic injustice can be used to renew phenomenological psychopathology and make it more epistemically just.

Lea Nickel

Lea Nickel is a PhD candidate in the Department of Medical Ethics and History of Medicine at the University Medical Center Göttingen, Germany. Her dissertation is focused on the influence of AI on doctor-patient communication. Her research interests lie in the fields of ethics of AI, empirical ethics and epistemic injustice. She is particularly keen on amplifying patients’ perspectives in the design, evaluation, and implementation of AI-based technologies in medicine. 

She wrote her master’s thesis on epistemic injustice in the psychiatric context: “Reden ist Silber, Zuhören ist Gold. Phänomenologische Psychopathologie im Dialog mit epistemischer Ungerechtigkeit” [Talking Is Silver, Listening Is Gold: Phenomenological Psychopathology in Dialogue with Epistemic Injustice]. In November 2025 she was awarded the Prize for “Philosophy and Ethics in Psychiatry and Psychotherapy” by the German Society for Psychiatry and Psychotherapy, Psychosomatics and Neurology for a shortened version of her thesis (forthcoming).

Loneliness: Canary in the Coalmine

In this reflection, Olivia Sagan situates her critical practice on loneliness in conversation with research on epistemic injustice.

Loneliness started getting a bad rap some time ago, accused of being the antithesis of happiness and labelled an epidemic, a public health issue and a lurking, silent killer. Two decades of research activity into this dark menace has linked loneliness to negative outcomes that run from depression to cardiovascular disease to premature death. Alarm bells clang about the rising rates of loneliness amongst the old, the young, and those in between. 

Meanwhile, governments scramble to develop policy and loneliness interventions. These appear to have dubious efficacy and in most cases pop a band aid over the deep gashes of a retreating welfare state which once provided amenities known to alleviate - if not circumvent - loneliness in the first place. I am not suggesting loneliness doesn’t exist. Given the multi-directional pressures of this quarter of the 21st century, however, my pitch is that the ‘loneliness pandemic’ is not about not having enough pals, but more a deeply discomposing existential ache: a heavy dose of Kierkegaardian anxiety, the dizziness of freedom, as we, free-floating fragmented ‘subjects’, try and make sense of multiple seismic changes to the Way Things Were. An uncertainty; a new malaise in the time of monsters, and one that we need to find new ways of negotiating. 

My main worry, meanwhile, is how alarmist discourses on loneliness may, via contagion, be nudging us to think ourselves into it. We know the stories we construct and hold on to about who and how we are become further enscripted into us, courtesy of our brain’s plasticity. In thinking ourselves into loneliness, succumbing to its vicious loop, we fall into another pathologized, medicalised, and individualised state of lack of agency. Such lack of agency and attendant anomie and torpor has alluring psychic and financial ramifications for Big Pharma, the burgeoning loneliness industry, and, as many commentators from Hannah Arendt on have grimly noted, political polarisation. 

Part of how we actually become lonely may be a feeling of not mattering - a deceptively trivial-sounding experience that has more than a bit to do with feeling unseen and unheard. An army of commentators have argued that the loss of trust in politics and a slide towards populism, a ‘thin-centred ideology’, are in part due to feeling overlooked and undervalued. At a time when it is apparently easier than ever to voice opinions, we are less likely to be heard, or to hear others. Third spaces, actual physical locations where people can convene, see, be seen, heard, matter - are in fast decline. Emerging accounts of people falling for the flattery of AI are telling – the “social sycophancy” of AI chatbots being an unanticipated offshoot of our hardwired need to be seen, recognised, and valued. 

Although not without its well-argued weaknesses, research on epistemic injustice has a role to play in constructing the uber-lonely subject in our sociopolitical moment. Testimonial injustice may indeed contribute to a sense of exclusion, thwarting the construction of a shared world: the very foundation Hannah Arendt saw as necessary for preventing loneliness. Working in tandem with hermeneutical injustice, epistemic loneliness is solidified through an inability to make one's own experiences intelligible even to oneself. 

When testimony and knowledge are discredited, we cannot establish the ‘web of human relationships’ that Arendt identified as constituting the realm of human affairs. The lonely person, like the epistemically marginalised, speaks into a void where our words cannot build shared reality, a form of ‘epistemic death’ where one's capacity to know and be known is fundamentally compromised. 

On the upside, this ‘loneliness crisis’ may help inspire us into a re-reckoning: about the essentially lonely business of being human at a particular moment of dehumanisation, which, even if we don’t fully endorse an ecological and spiritual collapse-ridden vision of, we can surely recognise. And about the need for moral transformation and overdue revisiting of human kindness. The kindness in that micro-ethic moment when we look at another human being and see them, and they speak to us and we listen and we disagree with them and we still listen. Not with epistemic justice, but with epistemic humility.

To know more: The ontological dislocation of loneliness. 

Reidpath, D. D. (2025). Decolonising epistemic injustice in global health. SocArxiv. https://doi.org/10.31235/osf.io/s2e8q_v1

Arendt, H. (1958). The Human Condition. University of Chicago Press.

Medina, J. (2013). The epistemology of resistance: Gender and racial oppression, epistemic injustice, and resistant imaginations. Oxford University Press.

Professor Sagan is Director of the Centre for Applied Social Sciences at Queen Margaret University Edinburgh, a chartered psychologist and former psychodynamic counsellor with 20 years’ experience of working with adults with long term mental health difficulties. Taking a critical perspective of the biomedical model of human distress, Olivia’s phenomenological research foregrounds explorations of autonomous strategies that people develop through which they confront, negotiate and make meaning of their conditions and experiences. Her work thus explores the resilience and creativity of the ‘ill’ – in the face of discrimination, stigma, isolation and structural inequality.

Olivia Sagan

When symptoms are silenced: Understanding epistemic injustice in women’s healthcare

In this post, Shame and Medicine’s Farina Kokab explores the epistemic dimensions of her work on women’s reproductive health.

Image credit: Wellcome Collection

Across healthcare systems, women prepare themselves for consultations knowing that the burden of proof often rests on them. Experiences of dismissal are not isolated incidents but reflect a long-standing pattern in which women’s symptoms are questioned, reframed, or minimised. This pattern cuts across chronic pain, reproductive health, and autoimmune conditions, and is intensified for women from marginalised ethnic and socioeconomic backgrounds. What appears, on the surface, to be a communication gap is better understood as a form of epistemic injustice embedded within medical training, clinical cultures, and organisational structures.

Dismissal rarely appears as an outright refusal to believe a patient. It often manifests in subtle behaviours that cumulatively undermine credibility: the shift in tone, the sigh, the avoidance of eye contact, the referral that leads nowhere, or the decade-long delay in diagnosing endometriosis. These are all moments through which women begin to question their own interpretations of their bodies. Within biomedical frameworks that privilege measurable evidence, women’s complex, fluctuating, and often invisible symptoms are easily reattributed to mood, stress, or hormones. Such explanations position the problems within the woman rather than within the condition, leaving her responsible for both her suffering and the failure to resolve it.

This dynamic is particularly stark in reproductive healthcare. After childbirth, women managing tears, surgeries, and complications are frequently sent home with minimal support, relying on limited resources, and the expectation that over-the-counter analgesia will suffice. Requests for help may be interpreted as exaggeration or dependency, reinforcing long-standing assumptions about feminine emotionality. In these contexts, women learn that speaking up carries risk: the risk of being labelled difficult, anxious, or attention-seeking. Silence, then, becomes a strategy for self-preservation, even as it delays or obstructs care.

Epistemic injustice offers a useful lens for understanding these experiences. Testimonial injustices occur when women’s accounts are given reduced credibility because of gendered assumptions about reliability, exaggeration, or emotional instability. Hermeneutical injustice appears when women lack the shared social or clinical language to articulate phenomena such as birth trauma, reproductive coercion, or chronic fatigue. Without interpretive frameworks that recognise these experiences, women struggle to make themselves intelligible within clinical encounters, and clinicians struggle to interpret their narratives in ways that guide action. Dismissal, in this sense, is not merely a failure of empathy but an epistemic harm with direct clinical consequences.

Structural conditions further shape these encounters. Time-pressured appointments encourage heuristic thinking, and organisational incentives prioritise throughput over deliberative listening. Clinicians often face their own emotional burdens when they cannot offer solutions, especially to patients who repeatedly seek reassurance or validation. Intersectionality compounds these challenges: women who are racialised, working class, migrants, or young are more likely to be stereotyped and thus more vulnerable to epistemic exclusion and exhaustion.

Women respond to these credibility deficits with considerable efforts. They rehearse their accounts before appointments, bring advocates to support their claims, modify the way they describe pain, conduct their own research, or seek alternative providers. These adaptive strategies illuminate the labour required simply to be heard and highlight the structural gaps within the system. They show that credibility must be worked for, rather than assumed, and that women often navigate healthcare environments that are neither receptive nor prepared for their stories.

Improving these dynamics requires more than individual goodwill. Listening must be treated as a clinical skill, central to diagnosis and care planning. Women’s interpretations of their own bodies should be given meaningful space, especially in contexts of diagnostic uncertainty. Organisational cultures that support curiosity, collaborative reasoning, and shared decision-making can reduce the epistemic burden placed on patients. Emerging work by female clinicians and advocacy groups demonstrates that alternative models are possible.

Ultimately, attending to epistemic justice is not just optional; it is necessary for safe and equitable care. Recognising women as credible knowers of their own bodies is a foundational step towards transforming healthcare encounters from sites of dismissal into spaces of understanding.

References:

Fricker, M (2007). Epistemic Injustice: Power and the Ethics of Knowing. Oxford University Press

Werner, A., & Malterud, K. (2003). “It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors” Social Science & Medicine, 57(8), 1409-1419

Hoffman, D.E., & Tarzian, A.J. (2001). “The girl who cried pain: a bias against women in the treatment of pain” Journal of Law, Medicine & Ethics, 29(1), 13-27

Farina Kokab

Farina is an experienced Qualitative Researcher with an interest in theoretical and conceptual framing of health inequalities, specifically women’s reproductive health. Her background in Psychology and Social Research enable her to undertake inter-disciplinary research and teaching. She is currently working as a Research Fellow on the Wellcome-Funded project, Shame and Medicine.

Epistemic injustice in phenomenological research in psychiatry

In today’s post, Karlijn van Vlerken summarises a talk she gave as part of the 2025 PhenoLab Summer School in Phenomenology of Mental Health in Foligno, Italy. 

Image credit: Marcus Spiske, Unsplash.

The promise of phenomenological research

Lived experience is increasingly recognized as an invaluable source of knowledge for the field of psychiatry. Voices that were historically denied as epistemic agents are now more often included in psychiatric research, practice, and policy-making, due to the advocacy of psychiatric survivors and activists. Phenomenological research focuses on the first-person perspective, and puts the unique knowledge derived from first-hand experience of a mental disorder at the very centre of the research. 

This way, subjective and lived experiences are prioritized as legitimate forms of knowledge. Phenomenology offers a space to articulate the inarticulable, to express disruptions to our ordinary ways of being, even when they are difficult to put into words. Phenomenological research can therefore identify and address epistemic injustice in psychiatry, helping move towards the realization of epistemic justice (Kidd et al. 2025). However, if not carefully conducted, there are also ways in which phenomenological research can be epistemically problematic. 

Potential problems of phenomenological research

Firstly, we should be aware of the selection bias that is often present in the inclusion of participants for phenomenological research in the psychiatric context. In order to participate in phenomenological interviews, people need a certain level of linguistic and conceptual ability (Scrutton 2017). They need to be reflective, articulate, and comfortable talking about their experience. 

People with learning disabilities or cognitive impairments are often excluded from phenomenological research, both implicitly and explicitly. Ironically, these are traits that are strongly linked to certain mental disorders. This is called ‘elite capture’: the knowledge produced comes from the most privileged participants, while others are left out (Okoroji et al. 2023).  In addition, typically only individuals who recognise or agree with their psychiatric diagnosis are included in the research. 

Another tendency in phenomenological research is the heavy use of technical and very specific language and an over-reliance on metaphor. While this serves a purpose and is to some extent part and parcel of phenomenology, it must also be clear that some people do not or cannot relate to some more complex formulations. You can think of people that have certain cognitive disabilities, but also persons that experience concretism (when figurative language is interpreted literally) who may struggle to grasp the abstract meaning behind complex and metaphorical language.

There are also several epistemic harms that can arise from how empathic understanding is used in phenomenological psychopathology. For example, epistemic co-opting can occur when a clinician or a researcher assumes a level of subjective understanding of a patient's lived experience that they simply cannot possess (Spencer and Broome 2023). In doing so, they co-opt something that doesn't belong to them, which can harm the patient by undermining their role as a self-defining knower. A related risk is epistemic objectification, which occurs when someone is treated merely as a source of information rather than as an epistemic agent with interpretive authority. 

These problems can lead to the empowerment of more educated sufferers, but also to further epistemic marginalization of the experiences of individuals with learning disabilities or other cognitive dysfunctions, or members of other groups routinely excluded from research participation, or vulnerable to exploitation when they are included. In turn, this can tap into different kinds of discrimination and negative stereotyping which can aggravate epistemic harms. 

Pragmatic suggestions 

First, research should facilitate and find creative and artistic ways to evidence non-linguistic forms of expressing experience alongside the linguistic forms that are widely present in most phenomenological research. 

The second thing that can be important to mitigate potential epistemic risks in phenomenological research is to be reflective of one’s own limitations and be transparent about them in research reports. Although it might not be possible to completely overcome selection bias in phenomenological research, it is necessary to be clear about who is and who is not included in the research and why. 

Third, co-production and joint research between experts by experience and academics and clinicians has the potential to contribute towards more level degrees of epistemic agency between all the actors. 

Lastly, in order to prevent epistemic losses, researchers need to put explicit effort into translating their findings into resources and tools that can actually be used by people experiencing mental disorders and that can help them express their experiences and first-person knowledge. 

Karlijn van Vlerken is a PhD candidate at the Erasmus University in Rotterdam, the Netherlands. She studied medicine and philosophy, and worked in psychiatric care for two years. Her current research focuses on phenomenology of postpartum psychosis. 

Alleviating Epistemic Injustice with Strategies from “Science and Values”

This post by Kevin Elliott unpacks the value disagreements that lie at the heart of many epistemic injustices in health care and policy

One of the reasons that epistemic injustice is challenging to tackle in medical contexts is that it can be difficult to decide how to handle situations where non-specialists challenge the views of the mainstream medical community. In some cases, non-specialists may have very important insights, whereas in other cases, they may be guided by misinformation. It’s understandable that medical experts want to resist misinformation, but how can they tell the difference between the two cases?

In an article published recently in Topoi, I argued that recent scholarship in the philosophy of science could help with tackling this challenge. Philosophers of science working on the topic of “science and values” have been exploring the wide array of value-laden choices that scientists make in the course of their research. These choices are value-laden in the sense that they have consequences for society, but they can’t be settled just by appealing to evidence and logic. When non-specialists disagree with medical experts because they are handling these sorts of value-laden choices differently, it suggests that the non-specialists’ perspectives should be taken seriously and explored further. 

Consider three important kinds of value-laden choices: (1) research questions and framing; (2) background assumptions; and (3) standards of evidence. First, non-specialists might approach problems differently from the mainstream medical community because they are asking different questions. For example, Maya Goldenberg contends that most public health experts who make claims about vaccine safety are focused primarily on their overall costs and benefits for society as a whole. She argues that some parents are unconvinced by the experts’ assurances of safety because they are worried that particular vaccines might pose significant risks to their specific children based on their unique characteristics. The parents might accept that the overall costs and benefits of vaccines are favorable for society as a whole, but they might doubt that the experts have adequately studied the risks of vaccines in all sub-populations.

Second, non-specialists might draw different conclusions than specialists because they adopt different background assumptions. For example, sociologist Gwen Ottinger  describes how communities living near industrial facilities in Louisiana have struggled to convince regulators to take their concerns about air pollution seriously. This is partly because of a difference in background assumptions: according to Ottinger, the regulators assume that they should focus on average pollution levels over an extended period of time (say, 24 hours or more), whereas community members argue that they sometimes experience lasting health effects from short-term spikes in pollution over much shorter periods of time.

Third, specialists and non-specialists might disagree because they demand different amounts or kinds of evidence. For example, sociologist Steven Epstein points out that many AIDS activists criticized the U.S. Food and Drug Administration (FDA) in the 1980s and 1990s for being too slow to approve new drugs. The activists felt that the FDA demanded too much evidence before declaring drugs safe and effective, especially considering that AIDS patients were willing to take risks because they were likely to die otherwise.

When non-specialists make these kinds of choices differently from medical experts, it does not automatically mean that the non-specialists are correct, of course. For example, vaccine-hesitant parents might be asking a question that has already been addressed. For instance, experts may have already assessed the risks to children just like theirs and found them to be insignificant. Or the background assumptions accepted by non-specialists might be highly implausible compared to the background assumptions accepted by the mainstream medical community.

Nonetheless, even in cases where non-specialists make implausible choices, clarifying these differing choices can still foster greater understanding and richer dialogues between medical professionals and non-specialists. By clarifying these choices, philosophers of science can help non-specialists communicate more effectively about why they disagree with professionals, and they can help professionals interpret the perspectives of non-specialists in more sympathetic ways. In some cases, medical professionals might even change their minds. For example, AIDS activists ultimately convinced the FDA to adopt an expedited approval process for some drugs, and they altered the ways some clinical trials were designed.

Admittedly, not all cases will turn out as well as the AIDS case. There will be some cases where those who question mainstream medical views are simply misinformed or operating in bad faith. But in order to promote a medical system that combats epistemic injustice, we need to explore ways to promote dialogue and mutual understanding in the face of disagreement. The philosophy of science can help with this task.

Note: This post is adapted from a post written for the blog of the American Philosophical Association, “Threading the Needle: Can We Respect Local Knowledge While Resisting Misinformation?”

Author bio

Kevin Elliott is a Red Cedar Distinguished Professor in Lyman Briggs College, the Department of Fisheries and Wildlife, and the Department of Philosophy at Michigan State University. His research focuses on the philosophy of science and practical ethics, with an emphasis on the roles that ethical and social values play in scientific research, particularly in the environmental health sciences. His books include Values in Science (Cambridge University Press, 2022) and A Tapestry of Values: An Introduction to Values in Science (Oxford University Press, 2017).

ADHD, Attachment Theory and Epistemic Injustice

In this week's post, Bozena Zoric summarises the argument of her recently published book ADHD, Attachment Theory and Epistemic Injustice

When I first started working as an NHS Consultant Paediatrician 30 years ago, I quickly realised that the mothers of children with ADHD that I met faced a serious problem. Their efforts to share information regarding their children's health and development were often misinterpreted because some professionals had negative stereotypes about these mothers. My impression of the mothers was that they were caring women wanting help for their children who were struggling at school. These children had already seen professionals in Child and Adolescent Mental Health Services (CAMHS)  teams. The issues children had were hyperactivity, problems concentrating, impulsivity, and some also had behavioural difficulties. These are all features of ADHD.

The diagnosis given by CAMHS was one of insecure attachment. I realised that children had ADHD, which is a developmental problem. The mothers were blamed unjustly for causing ADHD symptoms through insecure attachment.

Twenty years after I first encountered mother blame in ADHD diagnosis, I embarked on a scholarly journey to review how attachment theory relates to ADHD and appraise the evidence for this injustice towards mothers. I realised that this injustice continues in many different ways to this day.

The origins of attachment theory

Attachment theory originated in the UK in the 1950’s and 60’s. It was described by the child psychiatrist John Bowly, who initially used it as a diagnostic and therapeutic framework for emotionally disturbed children, but it eventually evolved into a theory about personality development. Bowlby said that attachment is an ‘innate process which, in an adequate rearing environment, leads to a stable sense of attachment security’. Attachment security depends on attunement and responsive interaction of a primary carer (in Bowlby’s view, a mother) toward a child, especially in emotional contexts. Sensitive attunement then fosters healthy personality development and provides a blueprint for future relationships.

Bowlby’s ideas about the emotional development of children and personality formation were widely followed in UK psychiatry. Bowlby believed that mothers must be re-educated to ensure the successful treatment of children with developmental and mental health issues. He pioneered family guidance clinics at the Tavistock Clinic in 1946, an institution that remains influential to this day. Bowlby’s followers, such as Alan Sroufe, a well-known attachment researcher, describe a child suffering with poor attachment as ‘a fidgety, impulsive child with poor concentration’.

However, there was and continues to be little evidence that attachment style was related to ADHD. A recent systematic research review by Jean-Francois Wylock and colleagues found no evidence of an association between attachment style and developing ADHD. Other factors, such as associated conditions, cognitive difficulties or contextual factors, were more relevant. They explored this further in an original study, which found that the behaviour and executive functioning of the children influence attachment rather than causing their ADHD symptoms.

 

ADHD and attachment theory in mental healthcare today

Nevertheless, the injustice towards mothers of children with ADHD continues. It is an example of epistemic injustice as professionals dismiss mothers’ perspectives and underestimate their capacity to produce and share knowledge. Having a child with ADHD symptoms, behavioural issues and educational challenges leads to conscious or unconscious prejudice towards them about how emotionally attuned they were to their children.

My conversations with mothers and family members who have been the target of this illustrate the profound self-blame and guilt this can cause.

For example, one mother told me of what it was like after her 10-year-old son was diagnosed with ADHD: ‘it was all my fault and my husband works quite long hours and if there is something wrong with the children it must be me’

Attachment difficulties may not be overtly mistaken for ADHD as often as they were 30 years ago but the parenting courses mothers are expected to attend even before their children are assessed for ADHD are often based on attachment theory, continuing to imply mothers’ blame even though  it is the educational institutions that should change their attitude to children with ADHD and be more supportive of their needs.

A mother of an adopted boy with ADHD, who was presumed to have attachment difficulties and was subsequently diagnosed with autism as well, told me:

I was brainwashed in thinking I need better parenting skills and kept going on parenting courses because I was told Bobby had attachment difficulties [as well as ADHD]. I blamed myself, and I felt blamed and I also blamed his biological parents. But I now know that he has got two genetically determined conditions as both ADHD and autism are in his biological family.

This needs to stop. Blame needs to be replaced by understanding children’s needs, celebration of neurodiversity and support for children with ADHD and their families. Valuing a difference rather than having a deficit and a disorder perspective will lead to a more positive experience of ADHD for individuals and society as a whole. I often use the name ‘Concentration Activity Neurodiversity’ (CAN) when I talk to my patients to emphasise that, with the right support, there should be no deficit or disorder in their functioning. The families with whom I spoke wish for ADHD in their children to be identified early and for the services to provide a just and non-blaming approach in managing ADHD and associated conditions.

Author bio

Bozena Zoritch qualified as a medical doctor from University of Zagreb, Croatia in 1982. She was appointed Consultant Paediatrician in NHS in 1997 and led one of the largest ADHD clinics in the UK for 20 years. She has published in biomedical research before engaging with medical humanities as a PhD student in 2016 at Birkbeck, University of London. She still works for an NHS provider in Surrey as a Consultant in the field of ADHD and autism. She is passionate about ensuring high-quality services for children with neurodiversity through clinical and academic endeavours.

Phenomenology, Speech and Belonging: A Workshop Report

This post by Lucienne Spencer reports on the proceedings of a phenomenology workshop held at the University of Bristol.

Some of the workshop speakers. From the left: Luciennce, Josh, Jae, and Ellie

On 26 November, the University of Bristol hosted the EPIC event entitled ‘Phenomenology, Speech and Belonging’, chaired by Havi Carel. These three key themes brought together by Anthony Fernandez (University of Southern Denmark), Nga Chun Josh Law (University of Bristol), Ellie Byrne (University of Nottingham), Jae Sul (University of West England), and Lucienne Spencer – that’s me! – (University of Oxford),

The event was kicked off with a talk by keynote speaker Fernandez. He considered how phenomenology can be operationalised as a rigorous research method through Phenomenologically Grounded Qualitative Research (PGQR), pioneered by Fernandez and his team. After bringing to light some of the benefits and drawbacks of more traditional phenomenological research methods, Fernandez cleared the way for PGQR as an innovative alternative that fills the gaps in the current research methodology. A distinctive feature of PGQR is the frontloading of phenomenological concepts within the study design, which will allow researchers to better draw out the ‘existentials’ (e.g. affectivity, body memory, etc.) of the participant’s being-in-the-world. At present, Fernandez and team are developing a tightly focused interview guide for PGQR, and will later reflect on distinct methods of phenomenological analysis. I imagine that those who, like myself, are attempting to shove phenomenological concepts into ill-fitting qualitative frameworks are relieved that this work is being done! These new and alternative methods of phenomenological research feel much needed, and I look forward to seeing what Fernandez and team develop in this space.

The following talks were connected by an implicit ambition to apply phenomenological methodologies and concepts to better understand the barriers to intersubjective cohesion experienced by three vulnerable groups: those in psychiatric therapy, older people and second-generation migrants.

I was up next, with a talk that mined Merleau-Ponty’s phenomenology of speech expression to consider how certain kinds of speech expression can lead to intersubjective attunement in the therapeutic space (‘speaking speech’) and how other forms of speech expression can inhibit this attunement (‘spoken speech’). Merleau-Ponty describes how speaking speechcan facilitate intercorporeality between the Self and Other, where we inhabit one another by taking up each other’s speech. In contrast, Spoken speech can be compared to what Ian James Kidd refers to as ‘vices of banality’, whereby concepts in illness are not properly treated with the reverence or complexity they deserve. For example, a person may be fobbed off with a ‘look on the bright side’. when discussing their depression. I suggest that Spoken speech both inhibits meaning-making in the therapeutic space and inhibits the vital intersubjective attunement between patient and healthcare professional. While my quest for the audience to do the hard work for me in considering the implications for speaking and spoken speech in AI went unanswered (I’ll have to get round to doing this myself…), I faced interesting suggestions to consider the ‘empty speech’ discussed in psychoanalysis and Heidegger’s idle talk.

Next, Law presented a chapter from his PhD thesis on Beauvoir’s existentialist phenomenology of old age. Law aims to understand how Beauvoir challenges conceptions of old age as a pathological decline of a transcendent being-in-the-world. Moreover, Law observed that Beauvoir’s account disrupts the established dichotomy between transparency in health and opacity in illness, positioning old age in an ambiguous space between the two. This results in a paradoxical state of what Beauvoir calls ‘normal abnormality’. As such, Law suggests that in Beauvoir’s depiction of old age, there is an oscillation between a visible and invisible body. Law’s talk also examined what Beauvoir perceives as a shift in the experience of temporality: rather than an open expanse of possibilities, one’s future feels limited, curtailing ambitions for future projects. This prompted Law to consider the role of the habitual patterns of embodiment in Beauvoir’s account, and how one can achieve a form of flourishing, rather than stagnation, within habitual patterns – what Beauvoir calls ‘the poetry of habit’. Law’s talk provoked discussion of ageism and how it can pathologise everyday acts, such as hobbies and habitual routines.

The final talk of the day was by Byrne and Sul, who discussed the phenomenology of belonging and psychosis in second-generation migrants. Their talk began by exploring evidence that the risk of psychosis is sustained (and in some cases even increased) in second-generation migrants compared to first-generation migrants. Byrne and Sul asked why this is the case and suggested that we may find the answer in a phenomenological account of familiarity and belonging. Drawing on the phenomenologist Alfred Schutz, Byrne and Sul examined how the migrant’s identity as ‘The Stranger’ persists even to second generations, despite the fact that they ought to have a familiarity and sense of belonging to the place in which they are born and grow up. They considered a number of phenomenological explanations for this disruption, including a breakdown in ‘mutual reciprocity’ and ‘epistemic familiarity’. This occurs when there are difficulties in a second-generation migrant’s capacity to recognise the behaviours, gestures, and expressions of others, and in turn a lack of recognition and uptake from others. A key idea that arose from this talk was that of second-generation migrants being caught between orienting (at least) two worlds, two cultural patterns, in which they are expected to display fluency.

Author bio

Lucienne Spencer is a Postdoctoral Researcher in Mental Health Ethics within the NEUROSEC Team in the Department of Psychiatry, University of Oxford. She works under the Wellcome Trust funded ‘Social Emotions’ project. She also leads the NeurOx Young People’s Advisory Group. Her research primarily focuses on phenomenology, epistemic injustice and the philosophy of psychiatry.

Self-diagnosis and its implications in child and adolescent psychiatry

This week's post by Christophe Gauld, Laelia Benoit, and Floriane Brunet considers how the increasing prevalence of self-diagnosis influences the relationship between clinicians and young patients.

In recent years, many adolescents have begun arriving at psychiatric consultations not to seek a diagnosis but to confirm one they already believe they have. They describe themselves as, for instance, autistic or having ADHD, after reading descriptions (online) that resonate with their experience. This phenomenon of self-diagnosis happily challenges established hierarchies of knowledge in psychiatry, especially in child and adolescent care.  

But it also raises an important question, which we explored in depth in a recent article: how should clinicians and young patients (re)position themselves in relation to one another, especially when differences in age and status necessarily influence the clinical relationship?

Let us recall that in most clinical contexts, diagnostic authority is concentrated in professional hands. And since psychiatric categories do not rely on biomarkers, the formulation of a diagnosis remain closely connected with social and moral judgments of harm. This interpretive dependence of diagnosis on clinicians creates an asymmetric epistemic space, in which the clinician’s account can prevail over the patient’s own lived experience and interpretation.

In children and adolescents, this imbalance could combine with childism, a form of discrimination that assumes the child’s voice is unreliable, immature or irrelevant. Like ageism, which marginalizes people because of age, childism operates on the same generational axis by devaluing children through assumptions of dependency and immaturity. It refers to a system of attitudes and practices that naturalise adult superiority, treating children as incomplete or incapable of rational understanding. Its specificity is in the transformation of developmental difference into a moral and social justification for inequality.

Childism operates structurally, embedded in institutional norms and clinical routines that reinforce adult authority and marginalise children’s voices. It frames adult perspectives as normative, establishing “standards of reason,” credibility and emotional coherence that children are expected to follow. In clinical practice, it appears to arise “naturally” from age differences. This naturalistic assumption biases how clinicians listen to patients whose discourse differs from their own. And this is compounded by the fact that childism intersects with other forms of discrimination (e.g., gender, disability, class, etc.), producing cumulative disadvantages that shape how young people are heard and understood.

To see how this might play out in clinical practice, consider an example. When, for instance, an adolescent comes to a clinician declaring “I think I’m autistic”, they do not simply misuse medical language. They reclaim interpretative power over their own experience. They demand recognition as knowers. These acts are epistemically and politically significant. They reveal how power and knowledge are interdependent in psychiatry: thus, although some self-diagnoses may rely on incomplete or misleading information, they also open a space for rethinking how clinical knowledge is shared and validated.

Due to their distinct conceptual histories and to the primary object of application of childism – i.e., childhood – epistemic injustice and childism are conceptually related and mutually reinforcing, operating across interconnected levels. Epistemic injustice designates a harm to someone’s capacity as a knower, which becomes visible within communicative and epistemic exchanges where authority and credibility are unequally allocated, and which contributes to broader structural patterns. 

Childism, in parallel, refers to the institutional norms, laws and professional practices that naturalise adult superiority, and which are enacted and reproduced within everyday clinical interactions. In this sense, childism both shapes and is shaped by interpersonal clinical practices, and epistemic injustice reflects how these normative assumptions are lived and negotiated in concrete encounters in child and adolescent psychiatry. Together, these overlapping dynamics help explain how self-diagnosis makes visible the ways credibility, authority and recognition are distributed in clinical care.

Bios

Christophe Gauld is a French adolescent psychiatrist with a PhD in philosophy of psychiatry (Université Paris 1 Sorbonne).

Laelia Benoit, MD, PhD, is a child and adolescent psychiatrist and researcher affiliated with Yale University and Inserm. Her work focuses on qualitative and mixed-methods research, child mental health, and the social and systemic determinants of psychiatric care..

Floriane Brunet is a French child psychiatrist and holds a university diploma in philosophy of psychiatry.